Cancer Survivors Network - Comments for "New Stage IV Metastasizing Melanoma Husband"http://csn.cancer.org/node/183913
Comments for "New Stage IV Metastasizing Melanoma Husband"en-csnLong time, and I'm sorryhttp://csn.cancer.org/node/183913#comment-1376618
<p>I haven't been back to this discussion since my wife was first diagnosed, and frankly I didn't know that anyone was still following or contributing to the discussion string - I wasn't "notified" when additions were added. &nbsp;I should have looked, but frankly, life's been crazy.</p>
<p>To bring anyone interested up-to-date, my wife, Cheryl is still on PLX4032. &nbsp;Yeah, that's right -40 months later. &nbsp;The melanoma seems under control, and I can attribute that to my wife's ferocious immune systemn, a great doctor at UCLA and PLX4032 / Zelboraf. &nbsp;We went into the trial knowing that it was going to be a temporary "fix", and that it was a bandaid to get us down the road. &nbsp;Maybe to an IPI trial, or maybe something else that was new. &nbsp;</p>
<p>We flew back and forth from DC to LA every month for nearly 3 1/2 years, but it was worth it. &nbsp;Cheryl became an A number 1 lab rat, but that didn't come easy. &nbsp;The side effects were bruatal - basically 99% of all her skin came off, cysts grew everywhere, she lost her hair and the nausea and diarrhea was daily. &nbsp;The side effects slowly subsided and now the sores have healed and "most" of the nausea and diarrhea have gone away. &nbsp;Her hair never has come back fully - it was previously long and straight, but now its short and very curly. &nbsp;Its easy for me to say this - I think it was damn worth it!</p>
<p>Heading to LA next week for the last day of the clinical trial - she decided she's had enough of the monthly LA trips and is going onto prescription Zelboraf out of Georgetown University Hospital. &nbsp;</p>
<p>We know that this isn't likely the end of the saga, but we feel much better and knowledgeable than when we started when this thing hit the fan. &nbsp;The best advice I can offer is to nail down the best stink'in melanoma specialist and hospital for YOU. &nbsp;Melanoma is not to be left to general oncologists. &nbsp;It's not a carcinoma - its something completely different. &nbsp;Getting that specialist can likely save your life. &nbsp;Some of the doctors you run into will piss you off, but its got to be you and your advocate's job to put your head down and bull your way through. &nbsp;Yes, a lot of these guys are selfish egomaniacs, but not all of them are. &nbsp;And the best thing we've got going for us is that we're living in a great age where science is taking advantage of advances in genome sciences and applying that knowledge to targeted and immuno therapies that work.</p>
<p>Best of luck to all of you out there. I wish you the best!</p>
Tue, 04 Jun 2013 22:06:15 +0000NailBitingHusbandcomment 1376618 at http://csn.cancer.orgAZD-6244 MK-2206http://csn.cancer.org/node/183913#comment-1322511
<p>My husband took ZELBORAF for 3-4 months and it worked well, then stopped working. And the disease came back. &nbsp;He is beginning a trial for&nbsp;<span style="background-color: rgba(255, 255, 255, 0);">AZD-6244 MK-2206. &nbsp;We are just hoping it works. He has several tumors, however the priority is on shrinking the tumor in the right atrium of his heart.&nbsp;</span></p>
<p><span style="background-color: rgba(255, 255, 255, 0);">This is my first time to the site. I've been curious about what other people think, what other people are experiencing. &nbsp;</span></p>
<p><span style="background-color: rgba(255, 255, 255, 0);"></span><span style="background-color: rgba(255, 255, 255, 0);">My husband, Bill ,is 34 years old. &nbsp;He went through a year of interferon (sylatron.). We wish they had scanned during that time because the tumors had reached to the heart and left eye among other areas. If they had scanned, the medical team would have realized that the interferon was not working and do something else.&nbsp;</span></p>
<p>Now I am a freak about going to EVERY single scan, appointment, anything he has, I want to be there. &nbsp;We are at Vanderbilt at least once every 2 weeks, but on this new trial mentioned above, we will be there at least once per week.&nbsp;</p>
<p>&nbsp;</p>
<p>Has anyone heard of this treatment? &nbsp;What is your experience with it?</p>
<p>Thanks</p>
<p>&nbsp;</p>
<p>MG</p>
Sun, 06 Jan 2013 11:09:40 +0000Michelle1977comment 1322511 at http://csn.cancer.orgIL2http://csn.cancer.org/node/183913#comment-1188372
<p>Can you please let me know if you went with the IL2 treatment, how it went, and how you are doing? My brother goes in next week and I am so nervous....</p>
<p>Thank you</p>
Sun, 29 Jan 2012 21:09:02 +0000Kelly7comment 1188372 at http://csn.cancer.orgalternative treatmentshttp://csn.cancer.org/node/183913#comment-1187635
<p>Hello,</p>
<p>My brother was just diagnosed with metastasized Melanoma in his left lung. He starts his Il2 treatment on February 6th. I have been doing non-stop research on this since I found out on Sunday. I have come across some very interesting treatment to do at the same time as the Il2.</p>
<p>PectaSol-C to slow down the cancer cells from growing.</p>
<p>Double Helix Water to repair the cells</p>
<p>Protandim for the repair of cells</p>
<p>Has anyone on this site used any of these items?</p>
<p>I am so glad I found this site, Im here if anyone has any questions and I would appreciate any input!</p>
<p>Thank you</p>
Fri, 27 Jan 2012 20:32:35 +0000Kelly7comment 1187635 at http://csn.cancer.orgThis might helphttp://csn.cancer.org/node/183913#comment-1165016
<p>A NASCAR driver from Washington DC had the same diagnosis and cured his cancer. His name is jerrod Sesseler. Let me know the outcome of contacting him or contact me and I will send you the DVD of his testimony and thetreatment he used. Don't know who you ate but I will pray for you and your wife!!!!! Good luck</p>
Tue, 06 Dec 2011 01:06:47 +0000Bingo2comment 1165016 at http://csn.cancer.orgStage iv melanomahttp://csn.cancer.org/node/183913#comment-1034215
<p>I agree something needs to be done about getting the message out there! Time is also of the essence when dealing with melanoma. They put tests off for weeks at a time, appointments are put off for weeks at a time. My brother was diagnosed a year ago and the only treatment he has received so far is interferon for 8 months and now radiation, which during this time the cancer spread to his bones, hips, spine, liver, lungs and now his brain. He was suppose to go to MD Anderson on April the 6th but is to weak to travel. I have been positive this whole time and kept the faith, I just want other people to be very diligent about getting help ASAP and hope the doctors dealing with this disease will act a bit quicker with a sense of urgency. They know better then anyone else what this disease can do! I pray your wife does well with all her treatments and wished I had been more diligent about seeking help online. </p>
Mon, 04 Apr 2011 09:57:17 +0000rebecca3380comment 1034215 at http://csn.cancer.orgIpi treatmenthttp://csn.cancer.org/node/183913#comment-1008973
<p>I am almost done with my "ipi" treatment. Started December 2010. My melanoma started as a mole on my knee in 2005. Came back in 2006 in the groin lumph nodes, returned again in 2008 in my brain and again in 2010 in my liver and spine. The treatment seems to be going well. I have itchy skin in the evenings and that's it.<br />
It didn't start out so great though. I had an emergency craniotomy and surgery on my coccyx to remove a benign tumor. That's when they found the melanoma had traveled to my liver and spine/bone. I have great doctors that have been with me from the beginning. They recommended the ippilimumab and blood tests are showing good results so far! I have a four year old and am staying positive and LOVE feeling great after a month and a half down.</p>
Tue, 22 Feb 2011 21:02:24 +0000morprocomment 1008973 at http://csn.cancer.orgipilimumabhttp://csn.cancer.org/node/183913#comment-1004209
<p>Hi<br />
Im a 37yrs old from Ireland im now stage IV met mil melanoma. first operation was in 2004 removal of freckle on my shoulder then it came back im my lung which was removed in 2009, back again in adrenal gland and ovary, they were removed in nov 2010 back adain in neck and other ovary in jan 2011, I was on interferon for 9 months before it camce back in gland and ovary, Ive had radiation on my neck because surgery is no longer an option, my proff has given me 6 months to live but is also putting me on ipilmumab stating next tues.. do you have any experince of this drug??</p>
<p>Thanks<br />
Shirley</p>
Tue, 15 Feb 2011 22:45:53 +0000ida123comment 1004209 at http://csn.cancer.orgNow 8 months NEDhttp://csn.cancer.org/node/183913#comment-969118
<p>Beginning second 12 week cycle...</p>
Sun, 26 Dec 2010 07:57:20 +0000LynnLuccomment 969118 at http://csn.cancer.orgMy husband goes to Moffitthttp://csn.cancer.org/node/183913#comment-963719
<p>My husband goes to Moffitt we see Dr.Kuchacar and We love this Hosp everyone is so kind and understanding takes the time to listen to you... My husband is on the IL2 treatment and its a hard regimen but it is working and thats all we can ask for they gave him 6-9months in Sept2010 and we pray that he will live long past that. We know that its not in our hands but Gods... </p>
<p>I do have a questions for anyone he keeps telling me he feels something moving through his body has anyone else had this feeling?</p>
Thu, 16 Dec 2010 16:27:47 +0000Lovingcomment 963719 at http://csn.cancer.org